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divinityrose (@divinityrose)

Hyoid Bone Syndrome

Ear, Nose & Throat (ENT) | Last Active: Jan 26 9:04am | Replies (67)

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Hi @divinityrose, welcome to Mayo Clinic Connect. I had not heard of hyoid bone syndrome before your post today. I did a quick Internet search only to discover that little is written about it. I found a related syndrome called Hyoid muscle dystonia which was discussed at Mayo Clinic Proceedings here: https://mayoclinic.pure.elsevier.com/en/publications/hyoid-muscle-dystonia-a-distinct-focal-dystonia-syndrome

Am I correct in understanding that you haven't been diagnosed officially with hyoid bone syndrome, but upon your research you discovered that your symptoms match closely with HBS, correct? Now you are looking for a specialist who in knowledgeable about this syndrome. Have you considered consulting neurology and/or ENT at Mayo Clinic? At Mayo Clinic you may benefit from their team approach to diagnosing and treating a patient. Here's a quote from the website about the Mayo Clinic approach:
"Your Mayo Clinic team will be hand-picked according to your unique needs. It will likely include specialists within and across departments to evaluate your condition from fresh perspectives. Plus, your team has access to more than 4,700 Mayo Clinic physicians and scientists on three campuses. If there's a question, alternate ideas and emerging research are just a phone call — or hallway — away. At Mayo Clinic, our approach leads to more answers and more happy endings for patients than anywhere else in the world." (https://www.mayoclinic.org/why-choose-mayo-clinic/what-makes-mayo-clinic-different)

Might be worth exploring.

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Replies to "Hi @divinityrose, welcome to Mayo Clinic Connect. I had not heard of hyoid bone syndrome before..."

I have considered it for sure but I live in Kentucky. For years I have tried to get various doctors to act like a team. It is excruciating and HBS lists everything I have exactly.

No diagnosis yet because no one I have talked to knows what it is.

I am willing to travel.

Thought I would start here and then figure out how to be seen at clinic

Hi everything you are describing I have experienced. As well as a lot of these Dr not being able to help or knowing anything about this kind of pain. My hyoid gets twisted and restricted and the only Dr who has been able to help me are osteopaths. When my osteopath releases and manipulates my hyoid back into the correct position all of these symptoms go away without any medication needed. My favorite osteopath is Virginia Johnson in Los Angeles CA. I hope this helps